There is no denying that mealtime can be a challenge for those with eosinophilic gastrointestinal diseases (EGIDs) who are on elimination diets. In this episode, co-hosts Dawn McCoy and Ryan Piansky discuss some creative strategies that can help make mealtimes easier with Holly Knotowicz, MS, CCC-SLP.   Holly Knotowicz is a Speech-Language Pathologist and a Feeding and Swallowing Specialist. Her background is in Communication Sciences and Disorders, and her areas of clinical interest include behavioral, oral motor, and oral sensory feeding disorders, including mealtime dynamics. Holly specializes in working with children who have eosinophilic gastrointestinal diseases (EGID), including eosinophilic esophagitis (EoE), and working with children who have food allergies, FPIES, and neurogenic disorders. She is an active participant in research, has been published in Gastroenterology Journal, and is an international speaker on feeding.   In this episode, Holly shares a little about her own journey with EoE, how that influenced her to dedicate herself to this field, as well as how feeding therapists can help care for those with these conditions. Holly draws on her years of experience to share tips, strategies, and creative coping mechanisms to improve people’s experiences with food, as well as how to navigate the social norms around food and eating. Tune in to find out more about how a feeding therapist can become an invaluable part of a healthcare team for someone with an EGID, such as EoE.   Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.   Key Takeaways: [1:40] Ryan introduces the guest for this episode — Holly Knotowicz. [2:40] Holly shares a little about how she got started in her field. [3:11] What is the role of feeding therapists in the care of someone with Eosinophilic Esophagitis (EoE)? [4:08] How does Holly collaborate with other specialists, specifically pediatricians and gastroenterologists? [5:27] What are some of Holly's tips for people who are just starting an elimination diet? [9:42] Ryan relates his personal experience of having limited foods in his diet. [10:37] What are some coping mechanisms that Holly recommends for people who have trouble with a new food? [13:30] Holly touches on the social aspect of food in our culture. How might someone with dietary restrictions navigate these social activities? [18:48] What are some of the long-term benefits of parents and children working with feeding therapy services? [21:17] How does Holly help children and families who have a reluctance to reintroduce certain foods back into their diet, and how can they work with their healthcare provider to do that? [24:50] What are some creative tactics and tools that Holly gives the children she works with to help them in the long term after they leave the treatment session? [29:20] How can someone locate a feeding specialist?   Mentioned in This Episode: American Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Email Holly Always-Sometimes-Future Foods Resource PickyEaters.co FeedingMatters.org Eosinophilic esophagitis (EoE) 2021 EOS Connection Patient Education Conference APFED Recipes EOS Connections Online Community APFED’s Specialist Finder   This episode is brought to you thanks to the support of our Education Partners: Bristol Myers Squibb, Sanofi Genzyme, and Regeneron Pharmaceuticals.

Hypereosinophilic Syndromes (HES) are a rare, chronic group of diseases and there are many unanswered questions as to the cause and prevention. Living with HES can be challenging, and in this episode, Debbie Alves shares insights about what it is like to live with HES, her road to getting diagnosed and treated, and what she has learned from her journey that could help others.   Debbie Alves has a number of medical conditions including asthma and HES. She managed her asthma well into adulthood and continued her demanding career as an economist despite worsening symptoms and complications. After a lengthy journey to her HES diagnosis, her symptoms are now under control.   Debbie outlines her long journey within healthcare system, and her various experiences interacting with doctors, specialists, and a diverse team of healthcare professionals with regard to her care. She shares her thoughts on the importance of communication between providers, creating a care team, and becoming an active participant in one's own health care. Although this is a story of one person’s experience with a specific rare disease, Debbie’s journey is relatable to patients who are searching for a diagnosis and working with more than one provider. Tune in to find out more.   *Content Warning: This episode includes discussion about depression. Listeners are urged to seek professional help if they struggle with these feelings.    Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their doctors. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [1:38] Ryan introduces the guest for this episode — Debbie Alves. [2:09] What has Debbie’s journey with HES been like? [5:43] It took 30 years for Debbie to get diagnosed. [8:36] How was Debbie’s mental health impacted along the way in this journey to diagnosis and treatment? [10:37] Finding a balance between an illness and the rest of your life can be complicated. What sort of things was Debbie able to do to alleviate that impact? [14:30] Debbie shares more about the variety of different providers who have supported her in her care. [16:08] Debbie explains what it was like to have her providers involved in the decision-making process related to her care. [21:45] What should people who are not currently involved in the decision-making process with their healthcare providers do? [29:53] In Debbie’s experience, how have providers managed communication and treatment plans? [35:01] Debbie shares more about her experience with good vs. bad days. [40:31] Learn more about Debbie’s experiences on her website.   Mentioned in This Episode: American Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Debbie Alves George Washington University Hospital National Institutes of Health NUCALA Fasenra Resources about Hypereosinophilic Syndromes by APFED Eosinophilic Disorders Support Group and Discussion Community by APFED Advocacy with APFED This episode is brought to you thanks to the support of our Education Partner: GlaxoSmithKline.

Living with a chronic illness can take a toll not just on the patient, but also on their partner, and their relationship. Whether it is a relationship between a couple, a parent and a child, family members, or even friends, living with chronic illness significantly changes the dynamic. In this episode, Barbara Kivowitz, MSW, shares insights about what these changes are, and how to cope with them. Barbara is a clinician, consultant, and author specializing in healthcare innovation with the goal of helping organizations shift to more relationship-based models of care. She is an advocate for the inclusion of the voices of patients and families in all aspects of health care delivery, research, education, and advocacy. Barbara has also co-authored Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other, a guide to help patient-caregiver partners and their clinicians navigate living with chronic illness. Barbara shares more about her own experience with chronic illness which inspired her to write the book, as well as some of the common challenges that patients and their partners face in living with chronic illness. She describes the impact of these challenges on relationships, and how best to resolve these issues. Barbara also has some inspiring wisdom about creating hope, and why that is so important. Tune in to find out more. *Content Warning: This episode contains references to topics that may be upsetting or disturbing for some listeners such as depression and suicidal thoughts. Listeners are urged to seek professional help if they have these thoughts or feelings. Resources can be found at the links below. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their doctors. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests are their own.   Key Takeaways: [0:52] Hosts Dawn McCoy and Ryan Piansky introduce themselves. [1:49] Ryan introduces the guest for this episode — Barbara Kivowitz. [2:26] Barbara shares a bit more about why she wrote the book “Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other.” [4:11] What kind of relationship dynamic did Barbara focus on in her book? [6:29] What are some of the common themes that emerged between patients and caregivers? [11:32] What are some of the solutions to common problems that may arise in patient-caregiver relationships? [18:08] For those who are newly diagnosed, where does Barbara recommend starting to engage between patient and caregiver? [23:01] How can people find common ground when they have different opinions about treatment options? [25:39] What are some of Barbara’s suggestions to find hope? [29:58] Barbara shares some final thoughts around the impact of chronic illness on relationships. [31:58] Get your copy of Barbara’s book from Rare Bird Books.   Mentioned in This Episode: American Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Barbara Kivowitz Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other, by Barbara Kivowitz and Roanne Weisman Buy the Book: Love in the Time of Chronic Illness — Rare Bird BooksResources for Coping with Chronic Illness by APFED   This episode is brought to you thanks to the support of our Education Partners: Bristol Myers Squibb, Sanofi Genzyme, and Regeneron Pharmaceuticals.   Tweetables: “How does illness affect the patient-caregiver relationship, and what can we do to build the kind of resilience needed to carry that heavy load of illness?” — Barbara Kivowitz   “The biggest surprise was the pattern that we call ‘love grows’ — how illness can be a catalyst for putting people in touch with their deepest selves and for what truly, truly matters.” — Barbara Kivowitz   “Just having the conversation, just talking about it makes things different.” — Barbara Kivowitz   “Being aware, being deliberate, and collaborating is a good formula. It doesn’t get everybody to a happy place, but it can get you to clarity.” — Barbara Kivowitz   “Hope is something that can be created.” — Barbara Kivowitz

In recent years, there has been a greater focus on infusing the patient voice in clinical research in the space of eosinophilic disorders. In this episode, co-hosts Dawn McCoy and Ryan Piansky discuss the shift toward patient-led research for eosinophilic diseases with Evan Dellon, MD, MPH. Dr. Dellon is an adult gastroenterologist with a clinical focus on eosinophilic gastrointestinal diseases (EGIDs) at the University of North Carolina at Chapel Hill. He also serves as a member of APFED’s Health Sciences Advisory Council. Dr. Dellon’s main research interests are the epidemiology, pathogenesis, diagnosis, treatment, and outcomes of EoE, as well as similar investigations into the other EGIDs. He is widely published in this area, and collaborates with investigators all over the world. Dr. Dellon highlights some of the different types of research in this field, the important role that patients play beyond just participating in clinical trials, and how patient engagement in research has evolved through the years. He also shares more about some of the trends in this area, and what we can expect in the future when it comes to patient involvement in clinical research. Tune in to find out more.   Key Takeaways: [0:52] Hosts Dawn McCoy and Ryan Piansky introduce themselves. [1:33] Ryan introduces the guest for this episode - Dr. Evan Dellon. [1:51] Dr. Dellon shares more about himself and the research he is involved in. [2:53] What are some ways patients are driving research in the eosinophil space to advance knowledge beyond trialing experimental drugs? [5:30] Patient participation in clinical trials is crucial in getting therapy approved, but when is patient input appropriate or just as critical? [8:37] There has been an increase in the number of survey interview opportunities for patients recently. How impactful is it for patients to participate in these types of projects? [13:33] How has patient engagement changed over the years, and how has that helped research? [15:51] Dr. Dellon explains more about the feasibility element of conducting research. [18:26] Who has a stake in research? Who are some of the key players impacted by research findings? [21:27] What are some ways that the healthcare field can improve patient engagement in research? What are the trends Dr. Dellon is seeing? [25:04] What does Dr. Dellon think the future of patient engagement in research will look like? [25:48] Dr. Dellon shares some final thoughts about patient engagement in research.   Mentioned in This Episode: American Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Dr. Evan Dellon APFED’s Health Sciences Advisory Council EGID Partners Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) Patient-Centered Outcomes Research Institute (PCORI) Food and Drug Administration (FDA) IBD Partners   This episode is brought to you thanks to the support of our Education Partners: Bristol Myers Squibb, Sanofi Genzyme, and Regeneron Pharmaceuticals.

Eosinophils are a type of white blood cell that play a role in immune responses and help fight off infections. When these cells build up and cause inflammation in the digestive system, tissues, organs, and/or bloodstream, without a known cause, it may be the result of an eosinophil-associated disease. Join the American Partnership for Eosinophilic Disorders (APFED) for a series of conversations with researchers, clinicians, patients, and other community members as we discuss practical strategies for disease management and treatments, research, and other topics of interest.